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Seeking opinions on my Dads options - low PSA metastatic prostate
FYI- long post (my apologies).
Hi everyone - new to this forum and posting to seek other opinions/advice or simply hear similar stories to the one of my fathers. Providing all context as it’s been an atypical journey in his prostate cancer. Originally diagnosed Stage IV Gleason 9, BRCA 2 positive at 53 yrs old in 2016; had a prostatectomy a few months later. This didn’t work and he received rounds of Docetaxel and radiation, then a salvage lymphadenectomy when there were local mets. In 2017 he started Lupron, which he was on for 7 years with PSA remaining undetectable. He was truly unhappy with the effects of Lupron and since they considered him in “remission,” they allowed him to stop Lupron and monitor PSA more closely in the meantime. At the end of 2025 his PSA rose to .18 and he began Lupron again.
Speeding up to Feb 2026, he started experiencing excruciating pain, unable to move and resulted in a trip to the ER. The CT scan found lesions on his spine and we went to his doctor in Mayo, to then find after a PET scan that he had spinal cord compression and his cancer metastasized nearly over his entire body (shoulders, hips, spine, skull, ribs, lymph nodes…). He went through 5 rounds of targeted radiation on his spine to reverse the SCC as emergency treatment. The MO was highly suspecting small cell transformation, and he underwent a spinal biopsy, which the results showed PSA was negative on tumor itself but biopsy showed adenocarcinoma. Everyone was surprised as everything aligned with small cell due to very low PSA but vast spread of mets. However, his PSMA PET scan did show uptake of 29…weird.
We discovered he has a TMB of 12 and his MO asked for compassionate use of Keytruda, which he just received his 2nd round of. The MO wants to do another PET scan at this 5th treatment, which will be around 3 months since he started Keytruda. Basically I am seeking thoughts on:
1. A second opinion from MSK believed the Keytruda was not working and not high hopes that it would, since little evidence to be effective for prostate cancer and he has had increased pain in the areas of his cancer since 1st treatment. They said they would have treated 1st with a PARP inhibitor, but his MO at Mayo says the response rate would probably be only 6-8 months for it and it doesn’t penetrate blood brain barrier. So, he believes the best option right now is still Keytruda.
2. Other options we know of are PARP inhibitors, Pluvicto, or trying Docetaxel again with combo of carboplatin. Problem here is insurance will not approve Pluvicto until he has tried an oral androgen receptor (Xtandi) AND a PARP inhibitor. In order to have Pluvicto as a future option, they are starting him on Xtandi now to fulfill insurance requirements and then eventually adding in Talazoparib in combination. The issue here is the high toxcitiy that comes with that combo.
3. Wondering if it could still be small cell in other parts of his body, and the part they biopsied happened to just detect adenocranima? As we know, this could still be a possibility as well as stated by MO, but how many times would we want to put him under for more biopsies… but that would also change approach to his treatment.
Are there any other treatments we should be looking into? Or any other tests/scans, or markers to be aware of? For his prognosis- his MO told us if it was small cell, he thinks my father has 6 months to 1 year, and if it was low PSA but still adenocarcinoma, due to the aggressiveness, they would try to extend his life 1 to 2 years. Of course this is very heavy news and we also want to consider quality of life before sending him into these high toxicity combos of treatment when we were told his prognosis is so poor. But at the same time… he wants to fight this and are looking to seek as much information as possible to have all options laid out.
Thank you all for taking time to read this.
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No apologies necessary. You are very caring with your father. He has been through a lot, likely more than most members on this board and are not in similar circumstances to comment. Please stay strong for your father at this time and he will have my prayers going through this.
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5 ReactionsGood afternoon!
Hold on, hold on to what you can, don't lose hope.
I have a couple of questions, if you don't mind.
1.Since 2016, when your father was diagnosed, has he taken any lutamides (darolutamide, enzelutamide, or erleada)?
2. Have your doctors monitored your testosterone levels over this entire time? How have they changed, and what are they now?
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2 ReactionsVery thorough explanation. It’s fantastic that you’re in the game advocating for him.
> is the metastases currently only to bone?
Regarding Scenario #2 (….insurance will not approve Pluvicto until he has tried an oral androgen receptor (Xtandi) AND a PARP inhibitor. In order to have Pluvicto as a future option, they are starting him on Xtandi now to fulfill insurance requirements and then eventually adding in Talazoparib in combination. The issue here is the high toxcitiy that comes with that combo.)
Since the insurance requirement is to “try an oral androgen receptor (Xtandi) AND a PARP inhibitor), I’ve known doctors to “try it” with only once, then immediately - with the requirement technically being fulfilled - to go to the next desired treatment (there bring no requirement to go through multiple rounds of Xtandi and/or Talazoparib, given the known quality of life impact).
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3 ReactionsI also have BRCA2. I’ve had surgery and salvage radiation And also had a Metastasis zapped on my spine. I’ve been on ADT for over eight years and for the last three years have been on Orgovyx and Nubeqa. You should talk to your doctor about having Nubeqa (Darolutamide) instead of Xtandi (Enzalutamide). It has a lot fewer side effects and works well with chemo. I have had prostate cancer for 16 years and have been undetectable for the last 31 months with that drug combo. If I were in the condition he is in I would definitely be taking a PARP inhibitor. I am holding off because the other drugs are working for me and the PARP inhibitor frequently causes anemia, Something I’m trying to avoid.
KeyTruda has been shown to work well with Prostate cancer patients that have MSI high and TMB-H. He does seem to have that so there is a chance that it may work.
If he has neuroendocrine prostate cancer, it can show up on an FDG PET scan. Regular prostate cancer won’t show up at all on that scan.
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4 Reactions"Exercise Medicine for Advanced Prostate Cancer" https://pubmed.ncbi.nlm.nih.gov/28562375/
Things have evolved since that article was published. Now, exercise has been proven to have an impact on colon cancer as good or better than some of the standard chemo therapies for colon cancer, i.e. the CHALLENGE trial.
Evidence as strong as what led that trials investigators to do that study exists for prostate cancer as well. A very similar study aimed at proving to oncologists that that same level of proof exists for certain types of exercise and advanced prostate cancer, i.e. the INTERVAL-GAP4 study, had to be closed prior to completion.
One main factor is it is very difficult to get patients to sign up for a study where one half of the participants get first class assessment and prescribed supervised exercise aimed at improving their prospects, and the other half gets handed a leaflet saying exercise is a good idea and sent home. Patients attracted to the idea of exercise as treatment don't want to get the shutout. This makes it hard to get enough patients to sign up that this study had to be cancelled. Othewise, some patients do exercise to the best of their understanding and ability anyway, which contaminates studies like this.
The CHALLENGE trial was earth shaking enough that it was published in the New England Journal of Medicine, and presented at a plenary session at the largest conference of cancer oncologists in the world, i.e. ASCO.
It is dawning on oncologists that exercise can be a first line treatment that benefits mental and physical health, that comes with few or no side effects.
The more advanced prostate cancer cases need a careful approach but advocates, like Dr. Rob Newton, claim results. The thing is, supervision by an experienced exercise oncologist would be best. Newton is attempting to get online personal advice going with his FitMed app.
I wish you the best.
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1 Reaction@denis76 hello has not tried any of those since his diagnoses in 2016. however, they are putting him on Xtandi (enzelutamide) now because it is a requirement to have tried an oral androgen receptor prior to being approved for Pluvicto. as for his testosterone levels, they are basically non existent - the hormone therapy (Lupron) has depleted them
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1 Reaction@jeffmarc hello, thank you so much for responding. I believe his doctor is prescribing Xtandi because it has more blood-brain penetration compared to Nubeqa, which is important to treat the cancer that has traveled to those places. however, I am scared of the side effects I’m hearing about Xtandi.
I will ask his doctor about an FDG scan - surprisingly, that has never been mentioned to us before. wishing you well, thank you for the advice
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1 Reaction@brianjarvis from what we know now it is in his bones and lymph nodes. however his doctor continuously speaks on how it’s important my dad gets treated with medications that have blood brain penetration… as for the approval of Pluvicto, he said he would want to have my dad on Xtandi for at least a few months before going to Pluvicto. we asked if we could technically do “one” treatment and request Pluvicto, but he said he’d want to see how he tolerates it for a few months. I’m not sure how I feel about that
@teddyflorida21 I understand your worries about postponing Pluvicto and the possible side effects of Xtandi. But the doctor's reasoning is sound if you look at the situation this way: the longer you can postpone Pluvicto by finding an oral med like Xtandi that will suppress the cancer for a while, the longer you have Pluvicto as a future weapon in your arsenal against the prostate cancer. Since Pluvicto is one of the last treatments available currently, it is smart not to use it until you really have to. The doctor is hoping that your father's cancer will respond well to Xtandi, thereby putting off Pluvicto until it is really needed. My husband did the same thing with Zytiga, which suppressed his cancer for three years before it quit working and Pluvicto was needed. Hope this helps. Hang in there.
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